Thursday, 11 December 2014

Medical Update: Jadon

During the past week, Jadon has had more than his fair share of
doctor visits. Last Thursday I took him to the pediatrician because he
had a five day history of cold and flu symptoms. Some of his other
siblings were experiencing the same symptoms so we knew he had picked up
a flu virus. He had been choking on his mucus throughout the night so
we were sleeping with one eye open and giving him steamy bathroom
humidity treatments, running a cool humidifier in the room and spraying
nasal mist up his nose to try to loosen the sludge. The doc gave him an
antibiotic and an oral prednisone prescription assuming he now had a
pneumonia.

Unfortunately, Thursday night was not much
better. In fact, his secretions were not really an issue but he kept
dropping his body temperature and having cold sweats. His forehead was
constantly coated with a bead of cold water and no matter how much we
attempted to warm him his temp was very low. I knew this was not a good
thing so in the morning my mother-in-law joined me in the trek down to
the Hospital for Sick Children. As I expected, after triage, we were
quickly whisked into a room and Jadon was put on a monitor. His oxygen
saturation dropped to 63% so the nurse put him on a little flow-by
oxygen. He was listless and lethargic much of the time.

Very
shortly after our ER arrival a doctor arrived to assess him. He had a
chest x-ray, blood work, ECGs, ventolin treatments, and multiple doctor
visits. He was taken on and off oxygen but in the end the ER staff
wanted it left on. His saturations were dropping frequently to the high
60s and once into the low 50s. At first the physicians thought he had a
respiratory infection but they then decided that, yes, he had a flu,
but it was his heart that was causing the low oxygen. He was having TET
spells due to the flu stressing his heart. This is something that is
not uncommon to babies with unrepaired Tetrology of Fallot. He was
admitted to the cardiac floor for observation then discharged in the
morning after his oxygen levels and energy level normal returned to near
normal. Although I wasn't thrilled about having to be at Sick kids in
the first place, there was an upside to it all. The ER docs arranged
for a cardiology work up Wed. Dec 10th (yesterday). I had already had
an appt booked with a local pediatric cardiologist, but the team felt if
he were already linked up with Sick kids, things might move along
quicker. They were also keen on having all of his tests on file in the
event of a subsequent ER visit.

Tuesday we headed to our regular pediatrician for a weigh in, and
check-up as well as a vaccination program start. Unfortunately Dr. B.
did not feel Jadon was well enough to start his vaccinations. (He has no
vaccinations as the orphanage doctor said he wasn't well enough to get
them) His weight was back to nearly where we started :(. But, he was
better clinically than the week before. Likely his weight dropped due
to his illness. Dr. B was able to access the results of all the
bloodwork and swabs and he told me Jadon tested positive for RSV. This
is a respiratory virus that is particularly tough on kids under 2 years
of age. It sends many babies into hospital every year. I was almost
relieved he had it because it was the one respiratory condition I was
afraid of him getting. I did not think he would fight it well at all.
So far he is doing not too badly. I had figured on a week in hospital
if he got RSV. Hopefully he will get fully over it soon.

Now, that brings us to yesterday...Wednesday. The morning started out with 45 min cardiac ECHO. (ultrasound of the heart and its surrounding structures) Jadon was a trooper. Since he will not lay on a stretcher without me, I laid on it with him laying on top of me. He lay so still during the test that he actually fell asleep. That's right. No sedation. Just a lot of friends and family praying :) After that was completed we headed for an ECG. Immediately after that, we were called in for a oxygen saturation check and medical history session by our cardiologist's nurse. I was in the midst of telling her Jadon's medical history when I noticed she kept readjusting his sat probe. It was reading in the mid to high 70s. I quickly informed her this was baseline and she shut the machine off. In the course of conversation I told her he had RSV and that I was trying to keep him away from all the other cardiac babies. She agreed it was a good idea and took me to a room to wait for the doctor. "It will be a bit of a wait as the doctor is seeing another patient, but this way you will not have to sit in the waiting room with all the others," she said.

I was led to a small dietician's consult room to wait as the examining rooms were all in use. I fed Jadon, played with him, played with him some more, and slowly started to get very tired. I had not had time to grab breakfast and it was 12:45pm at this point. My lone source of sustenance, apple juice, was not cutting it anymore. I dug around in the diaper bag and found a Mars bar. I felt like a little rebel chomping down on a chocolate bar in the dietician's consult room. The room had posters of the Canada food guide, articles about healthy cholesterol and plant sterols, and a pictorial of what a healthy plate of food looks like. It may have been the only time a chocolate bar has or ever will be eaten for lunch in that room...hee hee :)

We waited well over an hour for the physician. At which point Jadon became sleepy and dozed off in my arms. Finally, the cardiologist's fellow showed up, asked some questions, then told me the results of the ECHO. He said they can see the tetrology of fallot, the shunt is working well, and the pulmonary artery is a decent size. Say what? I was told he had a really small, underdeveloped pulmonary artery. The fellow explained to me that sometimes with increased blood flow the artery will grow. It appears that is what has happened! This is very good news! I was also told that he is not "shunt dependant". In plain English this means: If he develops a clot on the shunt he will go very blue, but he will not likely die if he is brought to the hospital urgently. His body will use other vessels to get to the lungs. This was music to my ears!

Once the attending doctor came in, he introduced himself and said he will be Jadon's Sick Kids doctor from now on. He explained Jadon's heart condition in detail, and said they would be presenting his case to the cardiovascular surgical team at either next week's meeting or the first one in January. Once that has happened, we will be called in to meet the surgical team in the preceding weeks. He also offered to arrange consults for the other needed specialties: ENT, Gen surgery, and genetics. ENT for his ear, Gen surg for his swallowing/feeding issues, and genetics to rule out a chromosomal issue. Hopefully things get arranged soon. I hate don't enjoy waiting. I was told that since Jadon is reasonably healthy and his shunt is functioning well to expect his surgery in 3-6 months.

While typing this blog post, my cell just rang. It was Sick Kids. The cardiology fellow was on the line... he called to say the list of patients was too long for Monday's meeting, and that Jadon would be presented at the first meeting in January. After that, I would receive a call. He then said, "Are you ok with that?"
"Yes." ...what else could I say?
I was a bit deflated but I also realize that nothing will be done during the two weeks following next Monday's meeting anyway. Christmas holidays are coming. Even the pediatric cardiologists and pediatric cardiovascular surgeons need a vacation.

Good to hear! And very good you've got one main Dr heading up the rest of your specialities! Will continue to pray for J's health and for your peace as you wait for it all to happen in God's good timing! Marianne

You sure have a way to explain the details of Jadon ' s condition very well.Definitely continuing to pray for you all. The difference in Jadon is already unbelievable. He is thriving in your home in spite of all his medical conditions. You are all troopers. With lots of love. Mom Parent xoxoxo